This past weekend, Michael and I went away together, just the two of us, for the first time in five years. Destination: San Francisco. Which, by the way, is the very first place we ever went away together to many, many moons ago in the infancy of our relationship. This is the fourth time we’ve been to SF together. I guess it goes without saying that we like this city!

Getting there –

Let me just say that I do NOT like to fly. Even these little puddle-jumpers make me anxious. The drink in the airport restaurant before we boarded helped a lot!

The hotel –

The Petite Auberge, built in 1917. I LOVE the old architecture in SF. On our arrival, two bottles of wine awaited us, compliments of my sweet, thoughtful, wonderful friend Amy.

Dinner the first night down at the Wharf –

Since we’ve already been here a number of times and have seen most of the big attractions (the Golden Gate Bridge, etc.), we decided to just wing it. So with no itinerary or concrete plans, we wandered the city on foot, by cable car, taxi and bus, and took in all the sights, sounds and smells. San Francisco is a seething pool of human diversity – there are people of all shapes, sizes, colors, languages, abilities, socio-economic levels, and orientations. It’s pretty exhilarating.

Oh, and it just happened to be the weekend of the Gay Pride parade! Although we missed the official event, people were gearing up for it all over the city. Even Gap incorporated Gay Pride into its window dressings – go Gap!

We ate and drank ourselves silly – it was a weekend of decadence and indulgence.

And then it was time to head home . . .

It was a much-needed respite from life as we know it.

***

I have to admit that I missed the kids while we were away. It was a little strange to be so far away from them. They were well taken care of, though, left in the capable hands of the lovely and talented, Alycia, who has been babysitting for us for about seven and a half years now.

In the interest of advocacy, and hopefully reaching other parents dealing with similar situations, I’d like to share our experience openly and honestly. If you are just now tuning in, the earlier parts of the process of transitioning Finn from Early Start services, which covers ages 0 – 3, to School District services, which typically begins immediately at age 3 for children eligible for services (in Finn’s case, Down syndrome is the diagnosis that qualifies him for services) can be found here:

Following up the second round of assessments, Michael and I drafted the following letter to the Preschool Assessments Coordinator for the school district, with a cc to our Regional Center service coordinator, and mailed it on June 12:

***

Dear ______:

We are writing to document our request to receive, at least one week prior to our son’s scheduled IEP meeting on June 28, drafts of any and all evaluation/assessment reports before they are finalized. As we are sure you know, this process is overwhelming for parents, and we need time to analyze the results and determine whether they appear to be a fair and accurate portrayal of Finnian’s abilities, or whether it is necessary to request an independent evaluation.

We would also like to bring to your attention and have you address some concerns pertaining to Finnian’s transition from the Early Start program through the Regional Center to the school district.

First, we and Finnian have been rushed through this process in a manner inconsistent with the Individuals with Disabilities Education Act (IDEA). We expected, and were given the impression, we would have an initial transition meeting well ahead of the evaluation process and IEP; and that we would be sent the District’s proposed evaluation plan so that we could review and understand it, and investigate whether the evaluations proposed were appropriate, as well as learn who would be the evaluators and their credentials. Second, we expected that the evaluations would be administered in a manner that would at least appear designed to accurately reflect Finnian’s abilities. As explained below, we are concerned the District may not be meeting its obligations under the IDEA with regard to these issues:

We received a letter from our Regional Center service coordinator, __________, dated January 31, 2011 stating that the transition process from Early Start to the school district had begun. In that letter, Ms. _______ informed us that a transition meeting with the school district would take place in April. However, April came and went with no word of a transition meeting being scheduled, so we contacted Ms. _________ by email on May 4 requesting a status. She responded by phone shortly thereafter and said she was still trying to coordinate a transition meeting with the school district and did not yet have any potential dates. It wasn’t until mid-May that we finally received a call from your office to schedule three meetings: the Transition Meeting, Assessments, and IEP. Given that Finnian’s third birthday is on July 7, time was clearly running short, and we were offered very little flexibility in the scheduling of these meetings; basically, we were told these were the three dates available (June 3, June 8 and June 28), period, with no alternatives.

Based on information given us by Ms. ________, we were under the impression that the transition meeting would be an opportunity to meet everyone on “the team,” discuss the transition process and possible assessments that would take place, and work together to come up with a transition plan, and discuss any concerns we had. Instead, we arrived on June 3 and were faced by a table full of people, had a consent form placed in front of us and were expected to read, understand, and give consent for multiple assessments of our son on the spot, and then go forward with said assessments right then and there. We were quite taken aback by how this was handled; we still do not understand why the consent form and descriptions of possible assessments couldn’t have been sent to us prior to the meeting so that we could have had an opportunity to give it some meaningful thought; we were told simply that it is not your policy to do so. As you know, we had to ask for a few minutes of privacy to discuss the consent form and ended up declining the majority of the assessments proposed for Finnian.

Directly after signing the amended consent form, your team began the assessment process, conducting multiple direct assessments of Finnian simultaneously. When I (Finnian’s mother) returned with Finnian on June 8, it was the same: you, the SLP and two occupational therapists proceeded to conduct assessments of Finnian simultaneously, intermingled with two or more of you asking me questions about Finnian simultaneously for purposes of written questionnaires. It was extremely stressful, to say the least, and not fair to Finnian at all. How any young child can be expected to “perform” in a strange setting, with multiple strange people all at once is difficult to fathom.

We therefore feel we have been rushed through the process and are concerned, based on time limitations and the manner in which the assessments have taken place, that the assessments might not yield a completely accurate picture of Finnian, and if this is the case, it will be difficult to construct a meaningful IEP for him.

We look forward to receiving the draft evaluation reports and proposed IEP as early as possible, but no later than one week before the scheduled IEP meeting of June 28. Thanks.

Sincerely,

Lisa and Michael Morguess

***

Just yesterday (ten days after our letter was sent, and the day on which we had requested to have the assessment reports in hand), we received voice mail messages from both our RC service coordinator and a different person from the school district – not the person our letter was addressed to (who was present at the Transition Meeting/Assessments), and not a person we’ve ever met or spoken to before. I didn’t even bother calling our service coordinator back; there doesn’t seem to be much point, as I imagine this is all pretty much out of her hands at this point with Finn’s third birthday looming in just a couple of weeks. We did copy her with the letter, mostly for purposes of making sure Finn’s file is fully documented.

I did return the other person’s call this morning. She identified herself as the Director of Assessments. So, it appears that we’ve now added another person to the process. She informed me that the purpose of her call was to let us know that she would be sending a letter to us addressing the concerns we outlined in our letter, and to let us know that they will not, in fact, have the assessment reports to us until the end of the week (she said they will go out in the mail Thursday, which means we wouldn’t receive them until Friday at the soonest, and Finn’s IEP meeting is scheduled for Tuesday, and we will be out of town this weekend).

I’m really irked by this. We stated at the very first meeting on June 3 that we wanted the assessment reports in hand by one week prior to the scheduled IEP meeting. “The team” agreed to make this happen (we did get the sense, however, when we requested draft assessment reports prior to the IEP meeting, that this is not their typical protocol; I got the distinct impression that they usually do not send the parents draft assessment reports prior to the IEPs at all, and just expect everyone to deal with all of it on the spot at the IEP meeting). We reiterated this request in our letter. It’s not that we’re trying to be pains in the ass – we truly do want to have time to go over the reports, understand them, request modifications we might feel are warranted, and/or, worst-case scenario, arrange for independent evaluations of Finn (which is within our rights). One week was by no means an unreasonable request to accomplish what we, as Finn’s parents, need to accomplish on his behalf. I understand that the school district is dealing with its own over-burdened, understaffed, under-funded system, but where does that leave us, the parents, and the children who are supposed to be helped and educated by the system?

What upsets me most of all, though, is that it doesn’t seem to me like they’re even trying to pretend that we’re all on the same side here, attempting to work together for Finn’s best interests. The whole thing spiraled down into an adversarial us vs. them from the first few minutes of that first meeting a few weeks ago, and I have such a bad taste in my mouth about the whole thing at this point that I would love to just wash my (our) hands of it. How am I supposed to feel good about putting my son in the hands of a system that clearly doesn’t give a shit about him?

Anyway, I told Ms. Director of Assessments that, since they cannot get the reports to us until the end of the week (if that), that we will not be attending the IEP meeting scheduled for Tuesday, and it needs to be rescheduled. She said that she will send a letter to us to reschedule the IEP.

It honestly feels like such a recent milestone, dropping Kevin off on his very first day of preschool. I remember being so worried that he would struggle against being left by me with a roomful of unknown kids and teachers in an unfamiliar setting. I braced myself for his tears and imagined him attaching himself to my leg and begging me not to leave him.

It didn’t play out that way at all. I took him into his new classroom where he happily scurried away from me, curious and ready to jump right in and explore, apparently seeing it as a new adventure. I quickly left before he could see me lose my composure, and went out to my truck and cried my eyes out. My baby! So grown up. I think that was the first time it hit me that from the moment they leave the womb, it’s a constant separating by degrees – separating of mothers and their babies. That’s what raising children is really about: teaching them, loving them utterly, providing for them, and watching them leave you by slow degrees.

Yesterday Kevin, that little preschooler, graduated from eighth grade. Oh, I know it’s only eighth grade – it’s not as big as his high school graduation will be or (god willing) his college graduation, but it was huge for this mother.

It’s all tangled up with love and pride and the realization that time is short; he now embarks on the last leg of his journey as a child.

Before receiving his diploma, Kevin and a number of classmates were inducted into the National Junior Honor Society, which required that they have a GPA of 3.50 or above, good citizenship, and the fulfillment of community service hours.

Shaking hands with the Principal

Clowning with friends

Help! I'm being swallowed by an emotional, mom-shaped creature!

***

Back at home . . .

And so we celebrate another passage. Kevin is now officially a high school freshman; he starts a summer school class bright and early Monday morning to get a jump-start.

The quality of the ideas and beliefs held by an individual or organization can be best judged by their willingness to be exposed to alternative ideas and beliefs, forcefully presented. Only after such a fair hearing can an informed decision be made about the relative merit of each.

I have a theory that we’re all closed-minded. At least about the things we feel very strongly about.

Take religion and faith. I often post links to articles and books on my Facebook page that support my particular views on religion and faith. Likewise, my Christian friends and acquaintances often post things on Facebook that support their beliefs. Facebook being the social network it is, it goes without saying that people post things there intending to spread their word, their beliefs, whatever they may be. The truth is, though, that I am pretty unlikely to click on any link that appears to support anything religious or faith-based, because I know it won’t resonate with me and it has a good chance of just irritating me, so what’s the point? I assume, on reflection, that my Christian friends do the same with my links and posts relating to my views on religion and faith: they probably ignore them, knowing they wouldn’t like whatever point or message I might be trying to get across.

On a larger scale, what about all the books out there that either support or deconstruct religion and faith? What’s the point of these books, really? Generally speaking, people tend to seek out things that they feel confirm their existing convictions. They’re not looking for things that might poke holes in their beliefs – in fact, people pretty clearly try to steer clear of information that might support an opposing viewpoint. I’m not exactly sure why, except that it’s safe to say that it’s a pretty frightening and overwhelming thing to consider the possibility that our own personal worldview might not be right. Not only that, but we want everyone else to see it the same way we do, because we want our views to be validated.

I don’t even think that these types of books – either books that promote religious beliefs or books that promote non-religious views – are actually written with the mass public in mind. The authors must know that no self-respecting atheist is going to seek out Christian publications, and no upstanding Christian is going to look for a scientific or philosophical manifesto on the origins of the universe. It seems that they are really intended for their own specific loyal audiences: religious books for people of faith, and non-religious books for us other folks. Maybe there is a market for these types of books for skeptics and people on the fence about where they stand on matters of faith, but I suspect neither type of book would sway someone who isn’t already leaning one way or the other.

So why do we with strong views and beliefs continue to seek out information that only supports what we hold dear? Do all of us really, secretly, way down deep inside, nurse some little nugget of doubt and we therefore need constant reassurance that we’re on the right path? Or is it, really, that we truly do hope to convince others to see things the way we do because we’re that sure that we’re right?

After a week on the east coast (during which he redeemed himself for the first few days of no contact by then calling three days in a row and even asking to talk to his brother), Kevin arrived home late last night. It’s a little embarrassing to admit how giddy I was when Michael went to pick him up around 11:00. When he came in, he was all smiles and seemed a little taller, though I’m sure he didn’t actually grow any noticeable amount in a week’s time. He was starving since he hadn’t eaten anything but airline peanuts since lunchtime, so I fed him reheated pizza while he regaled me and his dad with the highlights of his trip (his favorites of all the places he visited were New York and Gettysburg). He said to us, very earnestly, “Thank you for sending me.” That made everything worth it – just knowing that he valued the experience.

This morning after breakfast he gathered everyone in the living room and made a big production of presenting everyone with souvenirs he had brought back for each of us. Nothing extravagant, but I thought it was very sweet and thoughtful of him to spend a good chunk of his spending money on us and bring back little pieces of his trip for everyone.

I was worried that he would be a beast today, as he has a habit of coming home from overnights in a terrible mood, as if being away even for a night makes home seem mundane and unappealing, but he seemed to be glad to be home and spent a good part of the day playing outside with his sibs, and even taking Joey on a picnic (they do that sometimes).

So, I’m glad to have my boy home, and also glad that he had such a memorable experience getting a little taste of the big world out there.

It’s funny . . . I’ve realized that this process of transitioning Finn from Early Intervention to the school district is calling up a lot of the same feelings for me that I had surrounding mainstream maternity care when I began to explore going off the grid in that arena. My first birth, Kevin, was, extremely unfulfilling, frustrating, and even traumatizing on some levels for me. But it wasn’t until years later when I was pregnant again and wanting a better experience that I realized it was, to a large degree, in my hands. I could passively and blindly go along with everything my doctor and the hospital decided for me and then complain and feel victimized, or I could break out of the box, educate myself and become my own advocate, and take responsibility for getting the care I wanted (and declining the care I didn’t want) – all based on full information. And that’s what I did, hiring a doula, educating myself about what screenings and protocols were really necessary and/or beneficial to me and my baby, fighting the fights that were necessary in order to not be victimized by the system, and eventually opting out of the whole medical/hospital-based maternity system and choosing midwifery care and home birth. My two home births were a tremendous amount of physical and emotional work, but in the end, definitely the most fulfilling experiences of all my births – because I did the legwork, I educated myself, and I chose to be an active, accountable participant in my care, and not just a passive patient.

And so it will be with Finn’s education. I can sit here and wring my hands and cry and complain about all the ways in which the powers-that-be are getting it wrong, or I can do something about it. I can educate myself, learn everything I can about the school system in my area, the Special Education system in my area, laws that pertain to Finn’s education, IEPs and how they work, and the list goes on – and I can be an active participant, an advocate, and, in fact, the best expert on his team. I have a responsibility to do this.

We had a less than positive experience with Early Intervention, for a variety of reasons. We are already getting off on the wrong foot with the school district. I don’t at all like the way they’ve run the assessments, attempting to do multiple assessments by multiple people simultaneously in a setting unfamiliar to Finn. It seems ludicrous to me that it should be run this way. It’s not been productive, and it’s not fair to Finn. I don’t appreciate how these meetings were put off by the school district until it’s so close to Finn’s third birthday that they are now under the gun to get an IEP written as soon as possible. I feel let down by our Regional Center service coordinator who has never taken a personal interest in Finn or in us and has only seemed to go through the motions to get Finn’s file moved through the system.

But really, I have to shoulder some of the responsibility in all this. I’ve taken a passive role, assuming that our service coordinator would make sure Finn’s individual best interests would be looked after, assuming the school district would be sensitive, assuming the “experts” knew what they were doing and that it would all fall into place. It’s clearly not going to work that way.

So my goal now is to learn what I can and be a true advocate for Finn.

The second round of assessments with the school district people took place this morning. Michael had to be in court, so I was on my own this time.

After last week’s meeting and first round of assessments, it was difficult (impossible?) to go in there again today and not feel defensive. I arrived in the classroom, and there were four people waiting: the special ed teacher from last week, the SLP from last week, and two occupational therapists. I sat down at the table, determined to just observe and not get myself in a tizzy.

I would like to be able to be objective and find something positive to say, but the truth is, the whole thing was extremely stressful. For the first ten minutes or so, all four people swarmed on Finn, each of them trying to get him to follow simple directions, but simultaneously. It was utterly ridiculous. He was given no time to warm up to anyone, just stuck in a little chair at a little table with four complete strangers hovering and breathing down his neck, giving directions in sing-songy voices. He was game to sit and bask in the attention for about two minutes; then it was clear that he was overwhelmed. He kept whining and whimpering and trying to climb out of the chair, and each of them kept putting him back in the chair and trying to get him to “perform” (yes, the term “performance” was used more than a time or two). I really cannot fathom how they could expect to get anything meaningful out of him under such stressful circumstances.

After a while, one of the OTs came over to the table where I was sitting and started asking me rapid-fire questions about Finn. Then she put a written questionnaire in front of me and asked me to complete it to the best of my ability. Meanwhile, there are still three people with Finn, trying to get him to do things. I start filling out the questionnaire (questions pertaining to fine motor skills and sensory stuff), and then the SLP comes over to the table and starts asking me questions and marking down my answers on paper. So now I’ve got two people on me and two people on Finn, and we’re both overwhelmed. I guess I could have called a stop to the whole thing, but I honestly just wanted to finish and be done with it.

Finally, towards the end of the allotted hour, the special ed teacher came to the table and started asking me questions about Finn. Then she asked, “What is your goal here?” I said, “For school? You mean ultimately?” “Yes,” she said. “Ultimately, we want him fully included in a regular classroom,” I told her. She said that may be possible at some point down the line, but probably not to start. I already figure that a “mainstream” preschool is not even going to be on the table, that they are going to recommend/offer some type of developmental (special ed) preschool program for him, and that if we want something alternative, we will have to seek it out ourselves and it will not be supported by the school district or his IEP. Which is fine; we are completely willing to seek out whatever we feel will work best for Finn, be that what the special ed people through the school district recommend or not. I told her that if she was asking me what our goal for preschool is, I can’t answer that right now, that we need to see what they offer/recommend for Finn, explore that, explore other options, and then make a decision. She indicated that they are having some trouble coming up with an appropriate recommendation since we have declined so many of the assessments they wanted to do. I didn’t appreciate this kind of pressure and just smiled at her and didn’t say anything.

I am feeling very frustrated. My heart is bruised and my emotions are frayed. This is my son, my baby boy we’re talking about. He’s not some case or some file number. He’s a real live human being who has a whole life ahead of him, and unknown potential. I’m not kidding myself; I know he’s got challenges and will need specialized help, I know that. It’s just really, really difficult to be in this position, of wanting to protect him and shelter him, wanting him to succeed, not wanting to see him just get warehoused in the Special Ed system, and wanting these people – everyone – to see him as a person, a unique, wonderful, stubborn, affectionate, curious, willful, mischievous little boy.

This is a reality check. So many things are going to end up being battles we have to fight on Finn’s behalf. And I get the sense that the battles the school district people are accustomed to fighting with parents have more to do with parents wanting more services than the school district is willing/able to provide. They seem to not know what to do with us, the parents who are declining things, not asking for more, but asking that he not be seen through some cookie-cutter lens.

It’s not going to be a simple thing, just enroll him in school, bada bing, bada bang. It’s going to be an uphill battle, it feels like always. I suppose we could make things super easy and just sign on the dotted lines they put in front of us, initial the pre-checked boxes, let them stick him on a short bus going to some special ed program where nothing terribly meaningful will ever be actually expected of him. Let them do all their prescribed one-size fits all therapies on him, one more retarded kid moved through the system, don’t put up a fight, just cooperate and go along with it all. But I can’t, we can’t. I don’t know what Finn is going to be capable of, I don’t know what he will be able to be someday, I don’t know. But I want a meaningful life for him. I want to see him, one day, get on a charter bus with his classmates, headed for Washington DC for their eighth grade trip.

So now they will take whatever information they’ve gleaned from last week and today and put together an IEP for Finn. Our IEP meeting is scheduled for June 28. Stay tuned.

Kevin has been gone for three days now, and we haven’t heard a word from him. Despite my telling him before he left that I would appreciate hearing from him at least every other day just to touch base. Despite the fact that I watched him pack his cell phone. And his cell phone charger. Despite the fact that we made sure his account was loaded. Despite the fact that I sent him a text message just saying “hey” a couple of days ago. Not a word from the boy.

I know they are only allowed specific allotted times in the evenings to make phone calls. I’m not expecting anything during the day; I know they are constantly on the go, cramming a million site-seeing events covering four states into one week. Still, a phone call in the evening just to say, “I’m having a great time, this is so awesome!” would be nice. Especially knowing Kevin, who, despite the persona he adopts in front of his peers, is at heart a mama’s boy, still insisting that I tuck him in every night, still coming to me with every minor injury, still calling to me to “Watch this, Mom! Watch what I can do!”

Clearly this trip to the other side of the world (okay, that’s what it feels like, even if it is just the other side of the country) is a door opening for him – his very first opportunity to see and experience a world apart from his parents and family. This experience is all his, and his alone. I am incredibly grateful that we are in a position to give this to him; lord knows I didn’t get to experience anything like this growing up – no school trips, no sleep-away camp, nothing, because my parents just couldn’t afford it. But I guess I imagined just a smidge of homesickness, an enthusiastic call home as soon as he was able, to tell us what an incredible time he’s having. But nothing so far.

And really, it’s got me doing a little self-reflection. What do I expect of him and why? Do I feel like he owes us because we shelled out a shitload of money for this trip (although, yes, we conditioned it on his also earning some money to contribute to the cost, all in the name of instilling certain values like appreciation and a good work ethic)? Yes, I guess I do. More than that, though, I guess I feel like he has a responsibility to maintain some semblance of contact with us because he’s still a child.

I’m also having visions of him being all grown up, living on his own. Will he move as far away from us as possible, indulging us in the obligatory once-a-month phone calls in which he really reveals nothing about his life? I picture myself laying the guilt on him, “Yeh neveh cowall yeh mehtheh . . .” (Because in my imagination, I will be an old Jewish woman from New York, even though I am neither Jewish nor from New York.)

So, I’m not sure what to make of this whole thing. Is he just rightfully enjoying his freedom right now? Am I wrong to be getting my knickers in somewhat of a twist? Should I just go with it, allow him this opportunity to grow without guilt, and not take it personally? Should I try hard not to see this as a preview of things to come?

I know he’s okay, because I sent an email to his teacher who is there on the trip, and she assured me that he’s fine, and that she will remind him to call home.

It was about a year ago that we, the parents of then-soon-to-be eighth graders, were summoned to an informational meeting at school about the eighth grade trip to Washington D.C. It seemed like the trip was forever and a day away. Well, forever and a day went by in a flash (during which Kevin managed to earn more than $500 towards the cost of the trip through tutoring, babysitting, and lemonade stands), and yesterday evening we dropped him off at school where the participating eighth graders (now soon-to-be high school freshmen) would board a charter bus that would take them to the airport for a red-eye flight to the other side of the country.

The red satin jacket was required for the kids on tour; this is not a fashion statement Kevin would normally be caught dead making!

I am probably overly protective; I know this about myself. It is difficult to strike a balance between trying to stand between my kids and harm’s way, and allowing them to spread their wings enough to make them well-rounded, resilient people. There was a time when I would not have fathomed to the idea of sending my kid three thousand miles away without me or Michael. But there comes a time when you realize that it’s time to start letting go a smidge.

Kevin is not one for big, emotional send-offs, so I restrained myself, gave him a hug, and waited until I turned away to let the tears fall. We left him there with his friends, and saw the charter bus coming up the street as we pulled away. Sometime in the wee hours of the morning, Michael whispered to me that their flight had landed safely on the east coast; he got up in the middle of the night to check online.

A whole week he’ll be gone. He’s going to see a thousand things and experience things even I have not seen or experienced. I know he’ll come back a little older, a little more worldly. I’m really excited for him, but the house seems a little quiet and a little empty with him gone.